By Ann Wheat, executive director of Duet
June is Alzheimer’s & Brain Awareness Month—an annual reminder that Alzheimer’s disease and other dementias are a major public health issue. In fact, according to the Alzheimer’s Association, more than 50 million people worldwide are living with Alzheimer’s disease or dementias, including the six million in the U.S. diagnosed with Alzheimer’s disease.
When a loved one has Alzheimer’s disease or dementia, we mourn the profound loss of our loved one, yet there’s no public ceremony to mark emotional voids. “Society” does not acknowledge our grief. We are left to lament alone.
In her book, “Loving Someone Who Has Dementia,” Dr. Pauline Boss, PhD, addresses this very issue. She has coined the term “ambiguous loss” to describe the sensation of when your loved one is physically present, yet psychologically absent.
To manage the experience, she suggests “both/and” thinking. She encourages us to practice carrying contradicting thoughts, simultaneously. We must reconcile that our loved one is both here and not here, and make peace with the good enough relationship we have.
While we bemoan the loss of our give-and-take relationship, we can embrace the moments we are together, just sitting on the couch in the family room, or standing at the kitchen counter, or riding in the car.
We promote Dr. Boss’s concepts in our free support groups at Duet, and we offer a free video discussion series featuring Dr. Boss, titled, Finding Meaning and Hope. Consistent feedback proves the efficacy of her groundbreaking outlook. Ninety seven percent of caregivers say this program reduced their stress, helping to keep them from becoming dementia’s second casualty.
Recognizing the value of Finding Meaning and Hope, the Arizona Department of Health Services has brought the program to county health departments throughout our state. Arizona ranks first in the nation in new incidences of Alzheimer’s.
Many of us at Duet have experienced caregiving and dementia in our own lives. My sister, a brilliant landscape architect, was diagnosed on her fiftieth birthday with a rare form of dementia. By the time she died, our father had been diagnosed with Lewy body dementia, and shortly after, our mother developed Alzheimer’s.
Many times our family’s 15-year journey with dementia brought my siblings and me to our knees. Dr. Boss never minimizes how excruciating our circumstances are. Rather, she challenges us to view the experience through a different lens, and provides the tools to restore meaning and hope in our lives.
It’s universal to grapple with guilt and grief. Dr. Boss lays out guideposts for us to manage these paralyzing emotions. Rather than duel with guilt, we can normalize it. And we can acknowledge our grief, while dwelling on gratitude.
We wonder if we can make it yet another day. Yet we do.
Commiserating with others who “get it” in support groups, we establish camaraderie. We do not have to stand alone, together. We can stand together. Dr. Boss calls this a psychological family – a family of our heart and mind that has our backs as we share the journey. At Duet, we aim to partner with you along your journey, helping you allow a little sunshine to break through.
More info about Duet support groups can be found out at https://duetaz.org/family-caregiver/ or by calling 602-274-5022.